The invisible struggle for autistic women
December 3, 2017 10:34 AM Subscribe
I recoiled in silence, knowing no amount of explanation would break her stereotypes of autism.
Julia Bascom, the executive director of the Autistic Self Advocacy Network and a co-author of the study in Autism Research, explains:
For too many, though, that crucial diagnosis may never come. People who struggle with executive abilities tend to get ignored. The spectrum is labeled through the ability to communicate and socialize; adapting to daily life is not often factored into the diagnostic process. Difficulty with executive function is treated as a byproduct of autism, not a defining feature.
Julia Bascom, the executive director of the Autistic Self Advocacy Network and a co-author of the study in Autism Research, explains:
“There’s a long history of research ignoring people’s experiences and voices and focusing on the parts of autism that are most visible to neurotypical researchers. While autistic people tend to describe things like executive functioning, sensory processing, and movement as core parts of our disability, the scientific community unfortunately hasn’t gotten up to speed with us yet.”
Agreed indeed. Several people that know me seem convinced I have Asperger's (including a friend who is the mother of a person with Asperger's), while other people turn around and tell me there's no chance of it since I don't dwell on numbers and I talk...
:sigh:
posted by Samizdata at 10:39 AM on December 3, 2017 [5 favorites]
:sigh:
posted by Samizdata at 10:39 AM on December 3, 2017 [5 favorites]
The EF struggle described here is very, very real. I recently reduced my living quarters to 400 square feet and it's still extremely difficult to care for. I don't dare have plants or pets on my own, so there's not even a cactus to talk to. It's isolating and often traumatic.
posted by crysflame at 10:41 AM on December 3, 2017 [6 favorites]
posted by crysflame at 10:41 AM on December 3, 2017 [6 favorites]
I struggle with EF issues too. Thank you so much for sharing this. It's very validating.
posted by a constant satellite at 10:49 AM on December 3, 2017 [4 favorites]
posted by a constant satellite at 10:49 AM on December 3, 2017 [4 favorites]
I may have missed this in the article, and I may also be projecting my own experiences on to the author, but why would autism be the diagnosis here and not ADHD? Both have a strong tendency to be underdiagnosed in women.
posted by redsparkler at 11:46 AM on December 3, 2017 [16 favorites]
posted by redsparkler at 11:46 AM on December 3, 2017 [16 favorites]
Thanks for posting this. I realized a couple of years ago at age 45 that I'm autistic (thanks to Steve Silberman's book Neurotribes, which felt like it had mirrors on the pages) and it's helped make sense of a lot of things that never made sense before, as well as giving me ways of dealing with the present and future.
One of the things I'm glad to have learned is that autistic women who've managed to mask and pass "well enough" during adult life often find these abilities start failing as menopause approaches. (My personal, unscientific hypothesis is that we've burned through our reserves and finally have no more to pull from.) If I didn't know that this is a fairly common experience, I'd be worrying that I was finally truly losing it and imagining dire outcomes of losing my job and apartment and dying in a gutter. Knowing about it doesn't make the executive function issues any easier, but at least it feels like "okay, this is a known thing, and I can put some structures and framework in place to help deal with it", not "…am I losing my mind?"
We keep getting more and more research showing that autistic people have to consciously and intentionally do things that seem to come "naturally" to allistics. Sometimes it feels like being autistic is living life as QWOP, all the time.
posted by Lexica at 11:46 AM on December 3, 2017 [19 favorites]
One of the things I'm glad to have learned is that autistic women who've managed to mask and pass "well enough" during adult life often find these abilities start failing as menopause approaches. (My personal, unscientific hypothesis is that we've burned through our reserves and finally have no more to pull from.) If I didn't know that this is a fairly common experience, I'd be worrying that I was finally truly losing it and imagining dire outcomes of losing my job and apartment and dying in a gutter. Knowing about it doesn't make the executive function issues any easier, but at least it feels like "okay, this is a known thing, and I can put some structures and framework in place to help deal with it", not "…am I losing my mind?"
We keep getting more and more research showing that autistic people have to consciously and intentionally do things that seem to come "naturally" to allistics. Sometimes it feels like being autistic is living life as QWOP, all the time.
posted by Lexica at 11:46 AM on December 3, 2017 [19 favorites]
Yeah, this basically describes me: I can function ok socially, but I have pretty serious executive function and sensory processing issues. And my diagnosis is ADHD, not autism. Part of me wonders, though, if autism wasn't even on the table as a diagnosis for a highly-verbal girl when I was getting diagnosed with stuff.
posted by ArbitraryAndCapricious at 11:49 AM on December 3, 2017 [11 favorites]
posted by ArbitraryAndCapricious at 11:49 AM on December 3, 2017 [11 favorites]
It me. I am finally, upon hitting middle age, getting to a point where I can maintain a semblance order in a household and not completely f. up work assignments due to being disorganized. But it takes a very rigid adherence to routine and deliberately limiting my projects and commitments outside of work because I literally don't have the brainpower left to deal with them after all of my regular responsibilities are accounted for. It's a small and frankly sad way to live. And when new elements are introduced (for instance, when tackling a new work project of a sort I've never done before) I make profuse and embarrassing errors.
Thank god I've always known I don't want kids. I would not be able to raise kids and hold down a job and maintain my sanity.
I love reading stuff like this--makes me feel less alone, weird, and, as a family member used to call me, "backwards."
posted by whistle pig at 11:54 AM on December 3, 2017 [9 favorites]
Thank god I've always known I don't want kids. I would not be able to raise kids and hold down a job and maintain my sanity.
I love reading stuff like this--makes me feel less alone, weird, and, as a family member used to call me, "backwards."
posted by whistle pig at 11:54 AM on December 3, 2017 [9 favorites]
This EF stuff is exactly my partner. I'm always trying to support her better, whilst also fairly splitting household chores.
posted by Braeburn at 11:55 AM on December 3, 2017
posted by Braeburn at 11:55 AM on December 3, 2017
Oh wow. I got my diagnosis after reading Neurotribes too. Keeping everything together so I can finish college and hopefully work is difficult but I can't talk about it to anyone except maybe my parents because people will think I'm lazy. My parents used to think that but now they understand. (sometimes). I try to praise myself for when I pull off something with advanced planning involved. I managed to get a gift out for secret quonsar, alright, eat something sweet. I turned in my paper on time, alright, play some videogames. I forgot to get my mother a birthday gift.... SHIT. She was not happy about that one. EF can be debilitating and right now I think the only thing keeping me together is the stress of school. Once I graduate, without the structure... Bleh.
posted by Homo neanderthalensis at 11:55 AM on December 3, 2017 [3 favorites]
posted by Homo neanderthalensis at 11:55 AM on December 3, 2017 [3 favorites]
Oh dear, Lexica, here I was thinking I'd just clawed my way to some level of functioning in middle age. Your theory on burning out rings a lot of bells for me--I'm so very tired, these days.
posted by whistle pig at 11:57 AM on December 3, 2017 [4 favorites]
posted by whistle pig at 11:57 AM on December 3, 2017 [4 favorites]
Is an autism diagnosis ever accompanied by a prescription for ADD meds? It was such a relief when I finally got the right medication and some of my brain stuff started clicking, and I'm reading these stories and feeling anxious about what avenues and strategies are being made available to folks with a non-ADD diagnosis.
posted by redsparkler at 12:03 PM on December 3, 2017 [3 favorites]
posted by redsparkler at 12:03 PM on December 3, 2017 [3 favorites]
As an ADHD-er, I can definitely relate to the executive function issues, and the resulting low self esteem. I always find it interesting to talk to friends that were diagnosed as kids (whether with ASD or ADHD) - I wasn't diagnosed until I was 27, so I find that my relationship with the label is much different than theirs. For me, it was such a relief to finally have recognition that my brain is just different, plain and simple. As a kid growing up with really serious EF issues, I thought that there was something wrong with me - that I was inherently bad and lazy and morally inferior. Having the official diagnosis put so much of that to bed. I have so much empathy (particularly for AFAB folks, like myself) who are on the Autism spectrum and are undiagnosed.
posted by Jynnan Tonnyx at 12:05 PM on December 3, 2017 [10 favorites]
posted by Jynnan Tonnyx at 12:05 PM on December 3, 2017 [10 favorites]
Not a woman, but as an austistic person whose social presentation doesn’t neatly fit into the autistic stereotype — I can’t tell you how much I enjoy having autism condescendingly “explained” to me by some neurotypical whose experience of ASD is limited to reading some long-form articles online.
“You don’t seem autistic to me, so you probably have something else. I’m not an expert, obviously. But are you sure the real experts didn’t mis-diagnose you? I mean, the listicle I read was pretty in-depth.”
No facility with mathematics. No gift for coding. The ability to force eye contact when required. None of this matches the autist poster child. So, while I don’t go around telling people I’m autistic, on the occasions when the subject has come up, I’m sometimes surprised by the arrogance of people who would prefer to make their own amateur assessment rather than widen their too narrow, too simplistic definition of what autism means.
I imagine this is just a whiff of what it’s like to be a woman with autism.
posted by Construction Concern at 12:26 PM on December 3, 2017 [24 favorites]
“You don’t seem autistic to me, so you probably have something else. I’m not an expert, obviously. But are you sure the real experts didn’t mis-diagnose you? I mean, the listicle I read was pretty in-depth.”
No facility with mathematics. No gift for coding. The ability to force eye contact when required. None of this matches the autist poster child. So, while I don’t go around telling people I’m autistic, on the occasions when the subject has come up, I’m sometimes surprised by the arrogance of people who would prefer to make their own amateur assessment rather than widen their too narrow, too simplistic definition of what autism means.
I imagine this is just a whiff of what it’s like to be a woman with autism.
posted by Construction Concern at 12:26 PM on December 3, 2017 [24 favorites]
Honestly, I was ... somewhere between taken aback and actually concerned for the author, at the pics in the first article.
I really hope her self-value problems don't extend into exhibitionism, but all the underwear shots were a bit much.
posted by Dashy at 12:32 PM on December 3, 2017 [8 favorites]
I really hope her self-value problems don't extend into exhibitionism, but all the underwear shots were a bit much.
posted by Dashy at 12:32 PM on December 3, 2017 [8 favorites]
Interesting, I have a friend who has struggled like this for decades. She stopped driving because she couldn't concentrate long enough to do so safely. She's never been able to hold down a job unless it's a very regimented job but as she is smart she tends to get promoted beyond her capabilites, get overwhelmed and quit. She's in healthcare now which is perfect as there is a clear chain of command and it's repetitive and by rote, which she can do. But she did move home in her 30s. She was diagnosed ADHD but struggled with it and the medication for years. The unkempt appearance of the author and her room just really reminds me of her in her 20s, I used to go tidy her place all the time, drive her places and sit down and organize her day or her work day or her life but none of it ever stuck.
posted by fshgrl at 12:55 PM on December 3, 2017 [2 favorites]
posted by fshgrl at 12:55 PM on December 3, 2017 [2 favorites]
Wow. I am so her. And so some of you. ADHD, most probably autistic. Giant slob, and I would never make an appointment without my Android tablet/Windows Calendar.
posted by Samizdata at 1:07 PM on December 3, 2017 [3 favorites]
posted by Samizdata at 1:07 PM on December 3, 2017 [3 favorites]
Constant state of disorder, sans pants but with manicure.
posted by Ideefixe at 1:13 PM on December 3, 2017 [2 favorites]
posted by Ideefixe at 1:13 PM on December 3, 2017 [2 favorites]
I really hope her self-value problems don't extend into exhibitionism, but all the underwear shots were a bit much.
Re: the pants, I have to point out that autism has a huge sensory-sensitivity component. This is why autistic kids seem to be always fighting with their parents about clothes and getting dressed. To me, pants and bras feel very binding and restrictive and I find them extremely unpleasant. I gravitate towards bathrobes at home, myself, but I totally sympathize with her just wanting to wear nothing but a hoodie (no bra, I'm guessing) and underwear. The less sensory stress you have, the less emotional stress too. And, because social impairment, autistic women can be very clueless about when they're being sexualized by others. Because sometimes we just want to be physically comfortable in our bodies and other people's potential judgements don't occur to us in that moment.
Constant state of disorder, sans pants but with manicure.
+1 to this too. I find painting my nails to be a very soothing and meditative thing — unlike wearing pants. It's one of the few personal-appearance-management things I do with pleasure rather than annoyance.
posted by it's FuriOsa, not FurioSA at 1:25 PM on December 3, 2017 [23 favorites]
Re: the pants, I have to point out that autism has a huge sensory-sensitivity component. This is why autistic kids seem to be always fighting with their parents about clothes and getting dressed. To me, pants and bras feel very binding and restrictive and I find them extremely unpleasant. I gravitate towards bathrobes at home, myself, but I totally sympathize with her just wanting to wear nothing but a hoodie (no bra, I'm guessing) and underwear. The less sensory stress you have, the less emotional stress too. And, because social impairment, autistic women can be very clueless about when they're being sexualized by others. Because sometimes we just want to be physically comfortable in our bodies and other people's potential judgements don't occur to us in that moment.
Constant state of disorder, sans pants but with manicure.
+1 to this too. I find painting my nails to be a very soothing and meditative thing — unlike wearing pants. It's one of the few personal-appearance-management things I do with pleasure rather than annoyance.
posted by it's FuriOsa, not FurioSA at 1:25 PM on December 3, 2017 [23 favorites]
So, uh, what do you do when you have problems with executive function?
I had a major depressive episode in my late teens that basically derailed my life, and I've had trouble with executive functioning since then. It's less bad than it used to be, but even after years of meds and therapy (including CBT), I still have a hell of a time starting and switching tasks.
My job has been busy and on the weekends, I just end up staring at my phone and maybe get around to one chore. I can feel my life becoming stifling and small, but don't know how to make myself get up and do any of the things I need to do.
posted by evidenceofabsence at 1:35 PM on December 3, 2017 [10 favorites]
I had a major depressive episode in my late teens that basically derailed my life, and I've had trouble with executive functioning since then. It's less bad than it used to be, but even after years of meds and therapy (including CBT), I still have a hell of a time starting and switching tasks.
My job has been busy and on the weekends, I just end up staring at my phone and maybe get around to one chore. I can feel my life becoming stifling and small, but don't know how to make myself get up and do any of the things I need to do.
posted by evidenceofabsence at 1:35 PM on December 3, 2017 [10 favorites]
"...[A]bilities start failing as menopause...". Just wait until the autism pseudoscience community gets a hold of this idea! Soon they'll be forcing hormones on their autistic children both old and young [if they even acknowledge that adults can be autistic].
As an autistic adult woman whose parents were told that their six year old child was "almost autistic" I was never officially diagnosed until I was 40 years old [but *was* Dxd as ADHD at 6]. I wonder if menopause was creeping up on me and that's part of the reason it was recognized?
I think the other reason was the old diagnostic criteria was based on little boys that suffered a certain list of characteristics that were recognized by parents and professionals as very "severe" or at least very inconvenient for them [parents].
I think it was 1994 when the idea of Asperger's entered the DSM. So maybe it was impossible for professionals to say anything about all of my symptoms as a child [I had a very rough childhood psychologically anyway-- I never measured up to what parents and teachers wanted, thus was harassed and had nefarious motives attributed to my autistic characteristics] and young adult?
At least my parents apologized for how they treated me. They also found out that their grandson [my nephew] had Asperger's, so of course became more interested in autism then.
My executive function has *really* dropped off since I was about 40. So much so that I cannot function in all of the ways I used to-- like paying bills and dealing with authorities and pretty much anyone related to keeping my adult life together [water companies, electric company, repair people, police and courts, banks, telecom companies, and so on]. I'm not sure what to do when my parents no longer can help me with that. Hire a bookkeeper? I barely can call people back or answer the phone. I'm on disability due to how terrible I am with EF and other "adult" characteristics [that and my broken down body-- partly due to me not asking for help lifting things at work].
I wonder how many women are going through this right now, but have not been recognized as autistic?
posted by RuvaBlue at 1:40 PM on December 3, 2017 [9 favorites]
As an autistic adult woman whose parents were told that their six year old child was "almost autistic" I was never officially diagnosed until I was 40 years old [but *was* Dxd as ADHD at 6]. I wonder if menopause was creeping up on me and that's part of the reason it was recognized?
I think the other reason was the old diagnostic criteria was based on little boys that suffered a certain list of characteristics that were recognized by parents and professionals as very "severe" or at least very inconvenient for them [parents].
I think it was 1994 when the idea of Asperger's entered the DSM. So maybe it was impossible for professionals to say anything about all of my symptoms as a child [I had a very rough childhood psychologically anyway-- I never measured up to what parents and teachers wanted, thus was harassed and had nefarious motives attributed to my autistic characteristics] and young adult?
At least my parents apologized for how they treated me. They also found out that their grandson [my nephew] had Asperger's, so of course became more interested in autism then.
My executive function has *really* dropped off since I was about 40. So much so that I cannot function in all of the ways I used to-- like paying bills and dealing with authorities and pretty much anyone related to keeping my adult life together [water companies, electric company, repair people, police and courts, banks, telecom companies, and so on]. I'm not sure what to do when my parents no longer can help me with that. Hire a bookkeeper? I barely can call people back or answer the phone. I'm on disability due to how terrible I am with EF and other "adult" characteristics [that and my broken down body-- partly due to me not asking for help lifting things at work].
I wonder how many women are going through this right now, but have not been recognized as autistic?
posted by RuvaBlue at 1:40 PM on December 3, 2017 [9 favorites]
As someone suffering a broad spectrum mix of both (apparently) ASD and (apparently) ADHD symptoms, I'm far less concerned whether or not the disease is labeled one A*D or the other A*D, and far more concern with doctors recognizing - for example - "inability to do housework reliably (even if it's my heart's desire)" as a symptom to be treated with respect rather than with derision.
posted by crysflame at 2:03 PM on December 3, 2017 [12 favorites]
posted by crysflame at 2:03 PM on December 3, 2017 [12 favorites]
My sister runs a psychology clinic in Melbourne specialising in women and girls in the autism spectrum. She has a waiting list as long as your arm (it was six months the last time she mentioned it), with ASD having been massively underdiagnosed in women until recently. There have been many occasions when she diagnosed someone in her 50s or so, who then realised for the first time why her life had been so difficult until that moment.
posted by acb at 2:23 PM on December 3, 2017 [5 favorites]
posted by acb at 2:23 PM on December 3, 2017 [5 favorites]
Executive dysfunction is all out shitty, because people flat out don't understand how debilitating that is on its own. I wish - literally wish - My kids had autism or were in a wheel chair or anything where there was a shred of government funding for additional aids for them. They need it because of the level of their dysfunction, but insurance doesn't cover it and it is hell to afford.
And the executive dysfunction is the part which ultimately determines whether a person can self regulate and take care of themselves without burning the house down inadvertently.
God, I feel awful saying I wish a compounded disability on my kids, but damn - the system does not provide sufficient support for the day to day realities of it.
posted by Nanukthedog at 2:32 PM on December 3, 2017 [5 favorites]
And the executive dysfunction is the part which ultimately determines whether a person can self regulate and take care of themselves without burning the house down inadvertently.
God, I feel awful saying I wish a compounded disability on my kids, but damn - the system does not provide sufficient support for the day to day realities of it.
posted by Nanukthedog at 2:32 PM on December 3, 2017 [5 favorites]
The problem I keep running into: people cannot seem to grasp that when you have executive dysfunction, everything is slightly harder to accomplish. Like, your life is actually just harder than theirs is, on a daily basis, coping with tasks most people don't even think about—and that it all adds up, over time, to grind you down.
It's always just, "Why don't you [try harder/be more disciplined/organized/this one weird trick that worked for me]?" They always have a Helpful Solution.
This applies when I try to explain my autism, or my partner's ADHD, or my chronic pain and fatigue. Or depression. Or anxiety. Or anything of the sort. I think it's a colossal failure of empathy on all fronts—not understanding that someone's experience of trying to do something might be very different from their own. After all (so their thinking seems to go), those things are hard for everyone, right? You're just not trying hard enough.
It seems almost easier to explain if I can't do something at all—can't walk, can't leave the house, can't write. But the idea that it takes 50% more effort to get places on time, to process instructions, to do chores, to run your life—and that all of this wears you down over the years, leading to depression and burnout and exhaustion? And that you just have less spoons, and seem to accomplish less, overall, in the modern world? I can't seem to get anyone to understand this.
posted by fire, water, earth, air at 3:27 PM on December 3, 2017 [43 favorites]
It's always just, "Why don't you [try harder/be more disciplined/organized/this one weird trick that worked for me]?" They always have a Helpful Solution.
This applies when I try to explain my autism, or my partner's ADHD, or my chronic pain and fatigue. Or depression. Or anxiety. Or anything of the sort. I think it's a colossal failure of empathy on all fronts—not understanding that someone's experience of trying to do something might be very different from their own. After all (so their thinking seems to go), those things are hard for everyone, right? You're just not trying hard enough.
It seems almost easier to explain if I can't do something at all—can't walk, can't leave the house, can't write. But the idea that it takes 50% more effort to get places on time, to process instructions, to do chores, to run your life—and that all of this wears you down over the years, leading to depression and burnout and exhaustion? And that you just have less spoons, and seem to accomplish less, overall, in the modern world? I can't seem to get anyone to understand this.
posted by fire, water, earth, air at 3:27 PM on December 3, 2017 [43 favorites]
Yeah I'll admit I don't understand it, but I want to try. I have a sink full of dishes and a pile of unopened mail, but it's because I don't want to deal with it and it's much more fun to watch something on Netflix. When I feel like it, or when I need to, I'll take care of it. I don't intrinsically understand not being able to although I try to trust people when they say they can't. I'm single and live alone so other people's functioning doesn't affect me much right now, but it was really really stressful when I lived with a partner who has ADHD.
posted by AFABulous at 3:50 PM on December 3, 2017 [1 favorite]
posted by AFABulous at 3:50 PM on December 3, 2017 [1 favorite]
The way I have described it to my partner a couple of times is that sometimes I feel like I have a lead blanket laid over me and I literally don't have the strength to lift it. It's not a perfect metaphor, but I think it helps to get across the actually-can't-ness that I sometimes experience.
posted by IAmUnaware at 5:03 PM on December 3, 2017 [7 favorites]
posted by IAmUnaware at 5:03 PM on December 3, 2017 [7 favorites]
I have ADHD, and I've been told once or twice that I might have autism, and I would pay actual cash money for someone to tell me what the difference is.
posted by XtinaS at 5:34 PM on December 3, 2017 [8 favorites]
posted by XtinaS at 5:34 PM on December 3, 2017 [8 favorites]
It's not a perfect metaphor, but I think it helps to get across the actually-can't-ness that I sometimes experience.
In chemistry, there's a concept of an activation barrier - the amount of energy that needs to be present within a system in order for a reaction (even a highly favorable one) to proceed. (For example, paper burns readily, but the amount of energy available at room temperature isn't sufficient to ignite it.)
I think of that when it comes to executive functioning -- there's a much higher activation barrier for me to get specific things accomplished. (And, on the flip side, that means a lot of my work needs to focus on identifying the things that contribute to those barriers and lowering them.)
posted by steady-state strawberry at 6:12 PM on December 3, 2017 [28 favorites]
In chemistry, there's a concept of an activation barrier - the amount of energy that needs to be present within a system in order for a reaction (even a highly favorable one) to proceed. (For example, paper burns readily, but the amount of energy available at room temperature isn't sufficient to ignite it.)
I think of that when it comes to executive functioning -- there's a much higher activation barrier for me to get specific things accomplished. (And, on the flip side, that means a lot of my work needs to focus on identifying the things that contribute to those barriers and lowering them.)
posted by steady-state strawberry at 6:12 PM on December 3, 2017 [28 favorites]
Oh. Oh, this is me.
posted by a hat out of hell at 6:13 PM on December 3, 2017 [2 favorites]
posted by a hat out of hell at 6:13 PM on December 3, 2017 [2 favorites]
I find it so hard to embrace my diagnosis as an adult. Partly because my mom used it to justify a lot of things that I didn't like. (coaching about how to talk and behave, constantly being told I can't trust my perceptions, used it to downplay my gender dysphoria and clinical depression)
I work in software. I'm trans. My sister is autistic. Given those things alone, I'm probably autistic. But I hate to think of myself as autistic, because it takes me back to all the things I was told I couldn't do or would be hopeless to fix. And much of what I considered proof I was autistic has faded. I'm no longer afraid to talk to people. I'm comfortable making plans about my future. I'm comfortable with my body and being seen. I don't like being alone for too long and want to participate in conversation. I'm still disorganized, but I clean up my messes when I see a dysfunctional situation.
Maybe my mother and her choice of therapists gave me a warped view of autism. But it felt so dismal. I was told my depression was just how my feelings worked. That I'd probably never have many friends or be comfortable. That anybody I did befriend would get pushed away by my lack of empathy. I felt like I was condemned to a broken life.
I'm probably in denial. Maybe I should find a therapist who specializes in autism on top of my psychiatrist and lgbtq-friendly therapist. But it hurts to see my issues in that lens, after hearing it in such a grim view. I can't do voice work to sound feminine because it takes me back to all the times my mom would ignore me to say I was speaking wrong and lecture me until I forgot what I wanted to tell her. As a kid and even an adult, being told I'm not worth listening to is painful.
It's so weird to see a diagnosis used to dismiss my problems as a relief for adults. Maybe if I was allowed to live on my terms at a younger age, I'd not shy away from it.
posted by ikea_femme at 6:47 PM on December 3, 2017 [15 favorites]
I work in software. I'm trans. My sister is autistic. Given those things alone, I'm probably autistic. But I hate to think of myself as autistic, because it takes me back to all the things I was told I couldn't do or would be hopeless to fix. And much of what I considered proof I was autistic has faded. I'm no longer afraid to talk to people. I'm comfortable making plans about my future. I'm comfortable with my body and being seen. I don't like being alone for too long and want to participate in conversation. I'm still disorganized, but I clean up my messes when I see a dysfunctional situation.
Maybe my mother and her choice of therapists gave me a warped view of autism. But it felt so dismal. I was told my depression was just how my feelings worked. That I'd probably never have many friends or be comfortable. That anybody I did befriend would get pushed away by my lack of empathy. I felt like I was condemned to a broken life.
I'm probably in denial. Maybe I should find a therapist who specializes in autism on top of my psychiatrist and lgbtq-friendly therapist. But it hurts to see my issues in that lens, after hearing it in such a grim view. I can't do voice work to sound feminine because it takes me back to all the times my mom would ignore me to say I was speaking wrong and lecture me until I forgot what I wanted to tell her. As a kid and even an adult, being told I'm not worth listening to is painful.
It's so weird to see a diagnosis used to dismiss my problems as a relief for adults. Maybe if I was allowed to live on my terms at a younger age, I'd not shy away from it.
posted by ikea_femme at 6:47 PM on December 3, 2017 [15 favorites]
Yeah I'll admit I don't understand it, but I want to try. I have a sink full of dishes and a pile of unopened mail, but it's because I don't want to deal with it and it's much more fun to watch something on Netflix. When I feel like it, or when I need to, I'll take care of it.Especially if I only have one or two pretty simple tasks, I can take care of them. But I get really overwhelmed when I have a lot of tasks. I can't even remember what the tasks are: I just have this feeling of chaos. I can make a list, and that makes me feel better, but any particular task is going to entail a lot of steps, and figuring out the steps can also get me really overwhelmed. I also get overwhelmed if I get interrupted and lose my place in the list of steps, because it's hard to remember what the steps are and where I am in the process. (And I've got attention issues. I get interrupted a lot.) Because of my sensory issues, I can also get overwhelmed while doing a task. For instance, the grocery store was crowded today, and I don't do well in crowds. I've got some sort of issue where I can't properly gauge my distance from things, and in crowded spaces, I constantly feel like I'm about to knock into people. And for reasons I don't entirely understand, I respond to that by getting vertigo, which then makes the knocking-into-people thing worse, because it's tough to orient myself in space when I have false sensations of motion. So I had a bit of a dizziness meltdown at the grocery store, which was unpleasant. And then I was a bit out of sorts for a couple of hours after I got back, because the whole vertigo in crowds thing is a really unnerving physical sensation, and it takes a while to feel normal again.
Part of what I think I don't really convey to people is how *physical* my experiences of this are. "Overwhelmed" is a really unpleasant physical sensation. "Out of sorts" is a somewhat less unpleasant physical sensation, but it's still not great. And I also realize that I assume that people can tell when I'm overwhelmed, because I feel so awful, but actually there aren't any outwardly visible signs. So people I'm with sometimes mistake it for rudeness or spaciness, when really I'm just distracted because I feel seasick.
I have strategies to manage this stuff: making a lot of lists, for instance, and establishing routines. I try to go to grocery stores with wide aisles and to go when they're not busy. And I totally understand how it would stink to have a partner who never did the dishes, for whatever reason.
posted by ArbitraryAndCapricious at 6:51 PM on December 3, 2017 [14 favorites]
I think of it as potted-plant-itis.
Like, imagine you signed up to run one of those races for charity with a friend, and you wake up the morning of the race, and discover that in your bed at night you have been mysteriously turned into a potted plant. You can't move. You can kind of, sort of, think. Mostly you sit there, hoping for sunlight.
The question, under these circumstances, is not 'Am I going to get a good time in the race?'. It's 'Am I going to turn back into a human in time to get to the race at all?' Because you have no control over when you turn back. It might be in time for you to eat breakfast and grab all your running supplies and get out the door like the person people expect you to be. It might only be in time for you to grab some of your supplies, and you'll get there still trailing untied shoelaces and one sock. You might only turn back when your friend turns up in the evening going WTF WHERE WERE YOU WHY DO YOU KEEP DOING THIS, at which point you get to try to explain that you spent the day as a potted plant, and you think you made it to the bathroom once at about three p.m., but couldn't contemplate dinner.
It's not even, necessarily, that you were in a bad mood-- it's not like depression. Maybe there was sunlight! Maybe you sat there feeling zen about everything except for how annoyed you were that you couldn't FUCKING GET THE FUCK UP AND DO SOMETHING.
And every morning you get to roll a twenty-sided die that decides whether you woke up as a potted plant or not. And if you didn't, if you woke up human, well, you feel like you'd better do everything you can before you sit down again, because if you sit down, boom, maybe you're a plant, and you have all this shit that NEEDS to get done, so you can't slow down, you can't rest, gotta get it all done right now, except that the less you relax the higher the chance is that tomorrow morning, yet again, you are a fucking potted plant.
This is the best way I have of describing executive function problems: the rest of you are, unfortunately, sometimes asking a potted plant to act like a human being, and you-- and me!-- are going to get the same exact results in trying to get me to do things as if we asked a regular potted plant that hasn't ever been bipedal. I have very little control over my case of were-botany. We all just have to work around it, and it's going to be easier to work around if we all accept that it exists and that sometimes I turn into a potted plant and everyone just has to wait for me to turn back again.
/has been in bed for like the last three days solid, dammit
posted by Rush-That-Speaks at 6:56 PM on December 3, 2017 [53 favorites]
Like, imagine you signed up to run one of those races for charity with a friend, and you wake up the morning of the race, and discover that in your bed at night you have been mysteriously turned into a potted plant. You can't move. You can kind of, sort of, think. Mostly you sit there, hoping for sunlight.
The question, under these circumstances, is not 'Am I going to get a good time in the race?'. It's 'Am I going to turn back into a human in time to get to the race at all?' Because you have no control over when you turn back. It might be in time for you to eat breakfast and grab all your running supplies and get out the door like the person people expect you to be. It might only be in time for you to grab some of your supplies, and you'll get there still trailing untied shoelaces and one sock. You might only turn back when your friend turns up in the evening going WTF WHERE WERE YOU WHY DO YOU KEEP DOING THIS, at which point you get to try to explain that you spent the day as a potted plant, and you think you made it to the bathroom once at about three p.m., but couldn't contemplate dinner.
It's not even, necessarily, that you were in a bad mood-- it's not like depression. Maybe there was sunlight! Maybe you sat there feeling zen about everything except for how annoyed you were that you couldn't FUCKING GET THE FUCK UP AND DO SOMETHING.
And every morning you get to roll a twenty-sided die that decides whether you woke up as a potted plant or not. And if you didn't, if you woke up human, well, you feel like you'd better do everything you can before you sit down again, because if you sit down, boom, maybe you're a plant, and you have all this shit that NEEDS to get done, so you can't slow down, you can't rest, gotta get it all done right now, except that the less you relax the higher the chance is that tomorrow morning, yet again, you are a fucking potted plant.
This is the best way I have of describing executive function problems: the rest of you are, unfortunately, sometimes asking a potted plant to act like a human being, and you-- and me!-- are going to get the same exact results in trying to get me to do things as if we asked a regular potted plant that hasn't ever been bipedal. I have very little control over my case of were-botany. We all just have to work around it, and it's going to be easier to work around if we all accept that it exists and that sometimes I turn into a potted plant and everyone just has to wait for me to turn back again.
/has been in bed for like the last three days solid, dammit
posted by Rush-That-Speaks at 6:56 PM on December 3, 2017 [53 favorites]
I don't want to speak against women's experience, but I think that the three things about autism that clinicians never recognize:
a) how bodies movie in space
b) executive functioning, esp organizing
c) sensory problems
this effects every single thing that spectrum people do. I think women are civilized to pass better, and i think translating those experiences lead to a kind of continual failure of langauge
we don't have the lanuage to explain these failures, and bc clinicians keep thinking that it's social problems, or speech therapy, or aba--none of that work for example, teaches people how to work a schedule
(no matter how good of a writer i am, it is also the reason why planning an essay, or providing clean copy will be much less likely to happen)
(also, i have an therapist specializing in EF, a notebook, a daytimer, email, and i still miss an appointment one a week and have to check in like four times just to make sure i dont miss things)
(which must annoy people)
The therapist isnt funded, and i need someone to come over and unpack the spare room from moving six months ago, and thats not funded, and the funding for public disabled housing never considers us, and i have lived in 4 places in two years, i am convinced because of this
also, i have someone do my laundry for this very reason.
posted by PinkMoose at 8:47 PM on December 3, 2017 [6 favorites]
a) how bodies movie in space
b) executive functioning, esp organizing
c) sensory problems
this effects every single thing that spectrum people do. I think women are civilized to pass better, and i think translating those experiences lead to a kind of continual failure of langauge
we don't have the lanuage to explain these failures, and bc clinicians keep thinking that it's social problems, or speech therapy, or aba--none of that work for example, teaches people how to work a schedule
(no matter how good of a writer i am, it is also the reason why planning an essay, or providing clean copy will be much less likely to happen)
(also, i have an therapist specializing in EF, a notebook, a daytimer, email, and i still miss an appointment one a week and have to check in like four times just to make sure i dont miss things)
(which must annoy people)
The therapist isnt funded, and i need someone to come over and unpack the spare room from moving six months ago, and thats not funded, and the funding for public disabled housing never considers us, and i have lived in 4 places in two years, i am convinced because of this
also, i have someone do my laundry for this very reason.
posted by PinkMoose at 8:47 PM on December 3, 2017 [6 favorites]
I think of it as potted-plant-itis.
This is a really good description.
It is worth noting that problems with executive function are a hallmark of a variety of neuropsychiatric disorders, not just autism. I in no way mean that to cast doubt on the author of the first article's diagnosis or symptoms, or anyone else's; I only mean to say that if you're suffering with executive function and that is the primary symptom, autism isn't necessarily the most likely diagnosis. Nor does an autism diagnosis or non-diagnosis make your struggles with executive function any more or less real and neuropsychiatric in origin.
I struggle to some extent with executive function myself, though in my case it's related to depression and anxiety. It's reasonably well controlled with medication compared to a couple of years ago, though I would probably be better off if I could find and afford a therapist who would do cognitive-behavioral therapy or something similar, and somehow make myself stick with it. At the very least, it's been quite a while since I've had a day where I've desperately wished I could will myself out of bed, but been unable to.
posted by biogeo at 8:57 PM on December 3, 2017 [8 favorites]
This is a really good description.
It is worth noting that problems with executive function are a hallmark of a variety of neuropsychiatric disorders, not just autism. I in no way mean that to cast doubt on the author of the first article's diagnosis or symptoms, or anyone else's; I only mean to say that if you're suffering with executive function and that is the primary symptom, autism isn't necessarily the most likely diagnosis. Nor does an autism diagnosis or non-diagnosis make your struggles with executive function any more or less real and neuropsychiatric in origin.
I struggle to some extent with executive function myself, though in my case it's related to depression and anxiety. It's reasonably well controlled with medication compared to a couple of years ago, though I would probably be better off if I could find and afford a therapist who would do cognitive-behavioral therapy or something similar, and somehow make myself stick with it. At the very least, it's been quite a while since I've had a day where I've desperately wished I could will myself out of bed, but been unable to.
posted by biogeo at 8:57 PM on December 3, 2017 [8 favorites]
I have Officially Been Diagnosed with ADHD, major depressive disorder, generalized anxiety disorder, panic disorder, and social anxiety disorder. I'm also 95% sure that I'm on the spectrum but haven't been diagnosed as such because of my previous tours through the DSM...also a lack of decent mental health care.
Executive function issues have essentially destroyed my life over the past two years (concurrent with perimenopause, BTW) and all of the comments here are breaking my heart but they also make me feel less alone and/or crazy.
Also I haven't read the articles in the FPP yet...see above re: executive function. Heh.
posted by elsietheeel at 9:38 PM on December 3, 2017 [13 favorites]
Executive function issues have essentially destroyed my life over the past two years (concurrent with perimenopause, BTW) and all of the comments here are breaking my heart but they also make me feel less alone and/or crazy.
Also I haven't read the articles in the FPP yet...see above re: executive function. Heh.
posted by elsietheeel at 9:38 PM on December 3, 2017 [13 favorites]
I think socialization hits those sorts of things hard. There are so, so, so many days where things get overwhelming and I want to melt down in public. But I don't have a way to explain it to people who don't already have some context for how it works. How I can't understand what anybody says when there's background noise, how I talk too loud so I can hear what I'm saying over said background noise, how uncomfortable clothes completely ruin my ability to get work done for the day, how these things tweak my anxiety disorder like nothing. But I also, like--I don't know. My parents were not abusive, and yet I spent so much of my childhood terrified of their disapproval. And now it's my boss, or my coworkers, or whatever. However overwhelming it is, I might shut myself in the bathroom and cry for all of three minutes, or I might just stare at Youtube for a little bit before I can get back to actually working, or whatever. All of the screaming is internal, and it's almost always about stuff where I can't adequately explain to someone that, like, the whole reason I feel like collapsing into a puddle is that I accidentally wore a bra that doesn't fit right today, or because someone startled me walking up on me from behind while I had headphones in and it'll be an hour before I'm okay again.
I have the executive function stuff, too, but I guess I'm reasonably happy labeling those things as comorbid ADD? That seems to have worked better for me for getting services than trying to get an autism diagnosis. The only reason I ever consider the latter is in wondering if I could get my employer to find me a quieter place to sit or a work-from-home arrangement.
posted by Sequence at 10:16 PM on December 3, 2017 [22 favorites]
I have the executive function stuff, too, but I guess I'm reasonably happy labeling those things as comorbid ADD? That seems to have worked better for me for getting services than trying to get an autism diagnosis. The only reason I ever consider the latter is in wondering if I could get my employer to find me a quieter place to sit or a work-from-home arrangement.
posted by Sequence at 10:16 PM on December 3, 2017 [22 favorites]
I am so grateful to you people who are really my people / my tribe. So many similar experiences upthread. Thank you. At least now, I know why.
posted by b33j at 11:31 PM on December 3, 2017 [7 favorites]
posted by b33j at 11:31 PM on December 3, 2017 [7 favorites]
Oh.
So, that makes a lot of things snap into place.
Unfortunately, it doesn't give me any suggestions about what to do about them. And I'm about to lose the good health insurance for one of uncertain cost and quality and no changes until next November.
posted by ErisLordFreedom at 12:09 AM on December 4, 2017 [5 favorites]
So, that makes a lot of things snap into place.
Unfortunately, it doesn't give me any suggestions about what to do about them. And I'm about to lose the good health insurance for one of uncertain cost and quality and no changes until next November.
posted by ErisLordFreedom at 12:09 AM on December 4, 2017 [5 favorites]
It's so weird to see a diagnosis used to dismiss my problems as a relief for adults.
Yeah, I feel somewhat similarly - for me, a diagnosis was less a relief than a life sentence. Like, it doesn’t matter *why* I can’t do something, just that I can’t do it — and being diagnosed only meant that I could never do it. Maybe it’s a relief in retrospect for people who are older, but I can’t possibly imagine a world in which anyone cares why I’m not able to do things.
posted by steady-state strawberry at 4:01 AM on December 4, 2017 [8 favorites]
Yeah, I feel somewhat similarly - for me, a diagnosis was less a relief than a life sentence. Like, it doesn’t matter *why* I can’t do something, just that I can’t do it — and being diagnosed only meant that I could never do it. Maybe it’s a relief in retrospect for people who are older, but I can’t possibly imagine a world in which anyone cares why I’m not able to do things.
posted by steady-state strawberry at 4:01 AM on December 4, 2017 [8 favorites]
This is me, all my life, and now I am old. It explains a lot. I was never diagnosed with anything but depression; medication helps that but does not make me neat or organized. I have hated myself all my life for not being a "normal" woman as was defined for women in my age group, and feel I failed my children by never having a house they could bring friends to. I was lucky to have parents and an aunt who helped raise them. My husband is also not neat. I am bright and gifted in verbal skills, compassionate and friendly, but have never been able to do math beyond a fourth grade level. I have been called lazy for this all my life, and for my genuine lack of being able to organize anything on a material level. I have only held low level jobs because of lack of confidence to try for anything better. This or ADHD kind of explains things, but too late to do much about it.
posted by mermayd at 5:03 AM on December 4, 2017 [10 favorites]
posted by mermayd at 5:03 AM on December 4, 2017 [10 favorites]
In my own experience, I've found the trick is to stick to only a few tasks, and chop them into really tiny pieces before you start. My head simply can't juggle too many things, and I want to spend as little time on "What do I do now?" because that is where I get distracted.
posted by ikea_femme at 5:59 AM on December 4, 2017 [3 favorites]
posted by ikea_femme at 5:59 AM on December 4, 2017 [3 favorites]
What I always find striking about these articles (speaking as an AFAB person who has ADHD and has struggled for a long time with executive dysfunction) : in our culture, executive dysfunction issues that are seen as aberrant/extreme in women are often considered *perfectly normal* in neurotypical men.
We see this play out in the ongoing emotional labor discussion and in many Ask MeFis. Consider all those presumably neurotypical young men in their 20s and 30s out there who have rooms and wardrobes in a similar level of disarray to the authors. Many of us have heard about or known high-achieving men with good careers who somehow are incapable of remembering a child’s doctors appointment or to pick up milk. The old cultural expectation is that straight men naturally live in filth and disarray until a benevolent woman comes along to quietly and cheerfully manage things for them.
Women who are not neurotypical are cut almost no cultural slack for behaviors that are often considered perfectly normal for (again, presumably) neurotypical men: they aren’t living up to their expected Cheerful Manager role and thus are considered inadequate and bad. Struggling with executive dysfunction is still considered much more unnatural and shameful for women than for men.
Unfortunately, despite the fact our culture seems to “notice” women with executive dysfunction issues more quickly then men with corresponding problems, this doesn’t lead to greater understanding or access to treatment and help. And heterosexual women with these issues aren’t as likely to find a partner who will manage these problems for them.
posted by faineg at 7:16 AM on December 4, 2017 [52 favorites]
We see this play out in the ongoing emotional labor discussion and in many Ask MeFis. Consider all those presumably neurotypical young men in their 20s and 30s out there who have rooms and wardrobes in a similar level of disarray to the authors. Many of us have heard about or known high-achieving men with good careers who somehow are incapable of remembering a child’s doctors appointment or to pick up milk. The old cultural expectation is that straight men naturally live in filth and disarray until a benevolent woman comes along to quietly and cheerfully manage things for them.
Women who are not neurotypical are cut almost no cultural slack for behaviors that are often considered perfectly normal for (again, presumably) neurotypical men: they aren’t living up to their expected Cheerful Manager role and thus are considered inadequate and bad. Struggling with executive dysfunction is still considered much more unnatural and shameful for women than for men.
Unfortunately, despite the fact our culture seems to “notice” women with executive dysfunction issues more quickly then men with corresponding problems, this doesn’t lead to greater understanding or access to treatment and help. And heterosexual women with these issues aren’t as likely to find a partner who will manage these problems for them.
posted by faineg at 7:16 AM on December 4, 2017 [52 favorites]
What I always find striking about these articles (speaking as an AFAB person who has ADHD and has struggled for a long time with executive dysfunction) : in our culture, executive dysfunction issues that are seen as aberrant/extreme in women are often considered *perfectly normal* in neurotypical men.
IKNORITE
Disclaimer: I am very good at organizing and don't generally get so far behind with stuff that I get in trouble.
However - especially since a couple of "overwork" episodes a few years ago where I had to work 100-hour weeks and would sometimes just not get out of bed/shower/etc in order to meet the demands on me - that messed up my ability to keep a daily routine and I'm just now reconstituting my ability to reliably get up in the morning at the same time each day, get dressed, and sometimes even leave the house before sunset. Basic self-care has become my full-time job and work has become something I do in the seven or eight hours before breakfast and/or after bedtime.
It's not really an enjoyable life. I want to get back to what I used to be as soon as possible.
So on the rare occasions I do set up a date with someone, I just cannot stand it if the guy shows signs of being flaky in any way. What I want to do is: pick an activity, fix a time and venue, show up at the set time.
======
The last time I tried to set a date the guy sent me 50 messages in one evening, kept trying to chat with me saying he was lonely (I had just met him that morning), asked me to see him in 14 days' time, the next day, one week's time but he wasn't sure where and I said okay and he said oh wait no I have to go to work that day - all in the same conversation.
I persuaded him to fix a specific activity for a specific date and time. Then a few days before the planned date he asked if I was "still" okay to meet that night. I said "but $ACTIVITY isn't for another 8 days". And then the following weekend he asked me if I could come out that night (and travel 30 miles to see him) and when I didn't answer right away he said okay, how about tomorrow? And then he phoned and left a voicemail message asking me if my phone was working or did I just not want to talk to him or...
FUCKING DAMMIT
But because I'd said I would see him for $ACTIVITY I felt obligated to go through with that. The night before, he asked if I was driving (out of my way, from a location it should be obvious one doesn't drive to) and could I maybe drive (even further out of my way) to his place to pick him up for the even longer drive to the venue (and thereby be alone in a car with him, a stranger).
I said I was taking public transportation (which I was because it was the simpler option).
The morning of, he texted to say he didn't think he'd be able to get a sitter. I said that was fine, and I figured that was the end of that.
The evening of, he started texting me and saying how awful it was to be stuck home alone, and had I been to $ACTIVITY and was it any good, and would I mind text chatting with him for a while and
AAAAAAAAAAARGH WHY DO YOU GOTTA MAKE IT SO COMPLICATED
WHY
NO
====
And then I remembered the last time I'd tried online dating, the guy had said "OK I'll see you Tuesday then" with the ball in his court for making arrangements, and Tuesday came and went with no contact or reply from him, and then he got back to me a week later and said "do you want to meet next Tuesday" and there was another round of complicated negotiation around the definition of "next" and "Tuesday" which I do not expect to encounter in conversations with people who have adult levels of reading comprehension.
Anyway I explained that I had an event I had to attend for work and wasn't free next Tuesday, and he replied "what? Is this event something arranged [with some other guy] through the [dating] site?!? can I see you before Tuesday then?"
I just. Gave up? Because the guy can't remember what he wrote? And can't understand the very simple words I'm writing to him?
====
Are they all like this? Maybe I'm supposed to have more patience for this level of confusion and time-wasting... but life's difficult enough.
posted by tel3path at 8:49 AM on December 4, 2017 [3 favorites]
IKNORITE
Disclaimer: I am very good at organizing and don't generally get so far behind with stuff that I get in trouble.
However - especially since a couple of "overwork" episodes a few years ago where I had to work 100-hour weeks and would sometimes just not get out of bed/shower/etc in order to meet the demands on me - that messed up my ability to keep a daily routine and I'm just now reconstituting my ability to reliably get up in the morning at the same time each day, get dressed, and sometimes even leave the house before sunset. Basic self-care has become my full-time job and work has become something I do in the seven or eight hours before breakfast and/or after bedtime.
It's not really an enjoyable life. I want to get back to what I used to be as soon as possible.
So on the rare occasions I do set up a date with someone, I just cannot stand it if the guy shows signs of being flaky in any way. What I want to do is: pick an activity, fix a time and venue, show up at the set time.
======
The last time I tried to set a date the guy sent me 50 messages in one evening, kept trying to chat with me saying he was lonely (I had just met him that morning), asked me to see him in 14 days' time, the next day, one week's time but he wasn't sure where and I said okay and he said oh wait no I have to go to work that day - all in the same conversation.
I persuaded him to fix a specific activity for a specific date and time. Then a few days before the planned date he asked if I was "still" okay to meet that night. I said "but $ACTIVITY isn't for another 8 days". And then the following weekend he asked me if I could come out that night (and travel 30 miles to see him) and when I didn't answer right away he said okay, how about tomorrow? And then he phoned and left a voicemail message asking me if my phone was working or did I just not want to talk to him or...
FUCKING DAMMIT
But because I'd said I would see him for $ACTIVITY I felt obligated to go through with that. The night before, he asked if I was driving (out of my way, from a location it should be obvious one doesn't drive to) and could I maybe drive (even further out of my way) to his place to pick him up for the even longer drive to the venue (and thereby be alone in a car with him, a stranger).
I said I was taking public transportation (which I was because it was the simpler option).
The morning of, he texted to say he didn't think he'd be able to get a sitter. I said that was fine, and I figured that was the end of that.
The evening of, he started texting me and saying how awful it was to be stuck home alone, and had I been to $ACTIVITY and was it any good, and would I mind text chatting with him for a while and
AAAAAAAAAAARGH WHY DO YOU GOTTA MAKE IT SO COMPLICATED
WHY
NO
====
And then I remembered the last time I'd tried online dating, the guy had said "OK I'll see you Tuesday then" with the ball in his court for making arrangements, and Tuesday came and went with no contact or reply from him, and then he got back to me a week later and said "do you want to meet next Tuesday" and there was another round of complicated negotiation around the definition of "next" and "Tuesday" which I do not expect to encounter in conversations with people who have adult levels of reading comprehension.
Anyway I explained that I had an event I had to attend for work and wasn't free next Tuesday, and he replied "what? Is this event something arranged [with some other guy] through the [dating] site?!? can I see you before Tuesday then?"
I just. Gave up? Because the guy can't remember what he wrote? And can't understand the very simple words I'm writing to him?
====
Are they all like this? Maybe I'm supposed to have more patience for this level of confusion and time-wasting... but life's difficult enough.
posted by tel3path at 8:49 AM on December 4, 2017 [3 favorites]
I have no idea how many people are going to read that article and think, "oh. Oh. Oh!"
But when 20% of a population can't manage what a society claims is "normal proper living," the diagnosis is not "disability" but "systematic oppression."
I'm not saying this affects 20%. But it looks like this is widespread, mostly undiagnosed, mostly untreatable, and tolerated in the ruling class but not in those whose assigned roles include "make the ruling class happy and comfortable." Labeling this as autism (not arguing with that part) seems like a way to claim "it's a flaw in those individuals" rather than "something about our culture is inimical to the well-being of a substantial portion of the people born here."
I recognize a lot of the problems in the article. I have a good job and did great in school, but have a messy house, trouble with bills (everything's on autopay now, which is simpler but means I forget when I could shut things off), hassle with date-ish social commitments, and constantly feel overwhelmed. I've always known that my worst job problems are multiple low-priority issues; I can't figure out what to do next so I do nothing until there's a deadline. (I'm a whiz at "complete two week report in three hours." And with parenting, I tell people I majored in "Mom I need a shepherd's costume before the bus gets here.")
I don't know if that makes me autistic. If it does... is there a treatment? Meds to make me think differently so I can get dishes and laundry done? A note to hand to my boss to say "this is why you're not seeing progress on these three projects; plz give me a deadline for one of them?"Or is this a label I'm supposed to take up as a defensive shield against those who think I should be able to do a day job, manage a household, teach children to be independent, and care for a disabled spouse?
On the one hand, I want people with all sorts of disabilities to be accepted, to get the help and support they need to thrive. On the other, I'm giving a strong side-eye to the growing attempts to figure out "what's wrong with people, that they can't cope" instead of "what's wrong with our society, that our people can't cope?"
posted by ErisLordFreedom at 9:25 AM on December 4, 2017 [25 favorites]
But when 20% of a population can't manage what a society claims is "normal proper living," the diagnosis is not "disability" but "systematic oppression."
I'm not saying this affects 20%. But it looks like this is widespread, mostly undiagnosed, mostly untreatable, and tolerated in the ruling class but not in those whose assigned roles include "make the ruling class happy and comfortable." Labeling this as autism (not arguing with that part) seems like a way to claim "it's a flaw in those individuals" rather than "something about our culture is inimical to the well-being of a substantial portion of the people born here."
I recognize a lot of the problems in the article. I have a good job and did great in school, but have a messy house, trouble with bills (everything's on autopay now, which is simpler but means I forget when I could shut things off), hassle with date-ish social commitments, and constantly feel overwhelmed. I've always known that my worst job problems are multiple low-priority issues; I can't figure out what to do next so I do nothing until there's a deadline. (I'm a whiz at "complete two week report in three hours." And with parenting, I tell people I majored in "Mom I need a shepherd's costume before the bus gets here.")
I don't know if that makes me autistic. If it does... is there a treatment? Meds to make me think differently so I can get dishes and laundry done? A note to hand to my boss to say "this is why you're not seeing progress on these three projects; plz give me a deadline for one of them?"Or is this a label I'm supposed to take up as a defensive shield against those who think I should be able to do a day job, manage a household, teach children to be independent, and care for a disabled spouse?
On the one hand, I want people with all sorts of disabilities to be accepted, to get the help and support they need to thrive. On the other, I'm giving a strong side-eye to the growing attempts to figure out "what's wrong with people, that they can't cope" instead of "what's wrong with our society, that our people can't cope?"
posted by ErisLordFreedom at 9:25 AM on December 4, 2017 [25 favorites]
I see what you mean, Eris, but I can't imagine a society where I won't have to do such a
COLOSSAL
task as just
BRUSHING. MY. TEETH.
EVERY MORNING.
and then before you know it it's BEDTIME and I have to set aside an hour to DO IT ALL OVER AGAIN
Not that society makes it easy, but to believe there was NO disability involved I would have to believe that teeth-brushing is society's fault...
posted by tel3path at 9:29 AM on December 4, 2017 [9 favorites]
COLOSSAL
task as just
BRUSHING. MY. TEETH.
EVERY MORNING.
and then before you know it it's BEDTIME and I have to set aside an hour to DO IT ALL OVER AGAIN
Not that society makes it easy, but to believe there was NO disability involved I would have to believe that teeth-brushing is society's fault...
posted by tel3path at 9:29 AM on December 4, 2017 [9 favorites]
adapting to daily life is not often factored into the diagnostic process
Man does this resonate with me. I know what I used to be like, and I know I've spent decades figuring out how to act 'normal' and 'not extremely offputting.' These days I can even pass for charming! But it never came naturally to me.
posted by showbiz_liz at 9:32 AM on December 4, 2017 [3 favorites]
Man does this resonate with me. I know what I used to be like, and I know I've spent decades figuring out how to act 'normal' and 'not extremely offputting.' These days I can even pass for charming! But it never came naturally to me.
posted by showbiz_liz at 9:32 AM on December 4, 2017 [3 favorites]
Both? It can definitely be both. My problems with the workplace noise and expectations and conditions generally being unsuited to my brain are societal inflexibility. (We just got warned today that we're not going to be allowed to work from home anymore if we can't start getting more work done. I get twice as much work done when I work from home as I do at the office. Sigh.) My problems with showering and brushing teeth--god that's another sensory hell--are things that I have to work out how to deal with for the sake of my own health and well-being, and then there's a whole different set of things that I WANT to do that require focus or sensory tolerance that I don't regularly have.
I've been told I'm atypical in that most people with executive function problems are capable of focusing on "fun", but without actively managing my brain, I can't even watch TV shows or play video games productively. Having found ways to kind of end run around those problems has improved my life a bunch. If I watch stuff with other people, as it turns out, I'm more able to drag my brain back to where I want it to be--basically using my vulnerability to social pressure for good. Figuring out how my brain works has been a real help in figuring out how to make it do what I want, even if I have to have kind of a roundabout trip to get there.
posted by Sequence at 9:53 AM on December 4, 2017 [8 favorites]
I've been told I'm atypical in that most people with executive function problems are capable of focusing on "fun", but without actively managing my brain, I can't even watch TV shows or play video games productively. Having found ways to kind of end run around those problems has improved my life a bunch. If I watch stuff with other people, as it turns out, I'm more able to drag my brain back to where I want it to be--basically using my vulnerability to social pressure for good. Figuring out how my brain works has been a real help in figuring out how to make it do what I want, even if I have to have kind of a roundabout trip to get there.
posted by Sequence at 9:53 AM on December 4, 2017 [8 favorites]
> If it does... is there a treatment?
I took Abilify for a second and after I was able to stay on it for several months, it kicked at something that let me see for the briefiest of moments what it was like to be neurotypical. On a normal day, they can sit down and just study for class. Cleaning my room was suddenly just a matter of effort. I could just take a shower without sitting in the tub and crying for an hour.
I then fell into depression, stopped being able to go that psychiatrist, and haven't been on it since, but it was eye opening.
Since then I've found nitrous oxide (which relatively safe when compared to alcohol) has really helped cleave some sort of separation so my emotions aren't constantly overwhelming, and it has had lasting improvement. It's a different effect from being on Ability but far more accessible as it can be procured over the (smoke shop) counter, the onset is seconds and the duration is minutes.
posted by fragmede at 10:01 AM on December 4, 2017 [4 favorites]
I took Abilify for a second and after I was able to stay on it for several months, it kicked at something that let me see for the briefiest of moments what it was like to be neurotypical. On a normal day, they can sit down and just study for class. Cleaning my room was suddenly just a matter of effort. I could just take a shower without sitting in the tub and crying for an hour.
I then fell into depression, stopped being able to go that psychiatrist, and haven't been on it since, but it was eye opening.
Since then I've found nitrous oxide (which relatively safe when compared to alcohol) has really helped cleave some sort of separation so my emotions aren't constantly overwhelming, and it has had lasting improvement. It's a different effect from being on Ability but far more accessible as it can be procured over the (smoke shop) counter, the onset is seconds and the duration is minutes.
posted by fragmede at 10:01 AM on December 4, 2017 [4 favorites]
tel3path, I'm not trying to be a jerk but if you have problems brushing your teeth every night, why not cut some slack to the guys you're trying to date? How do we differentiate "being inconsiderate" from "has a disability"? What if the guy who can't figure out Tuesdays has a learning disability?
More generally, all these things exist on a spectrum for all people. I don't believe that "neurotypical" exists. I have probably spent a lot of money on gas waiting outside for friends who are "almost ready to go" when I've texted them an hour before I was going to leave my house, when I left, and when I was almost there. Are half my friends disabled? I just feel like ... how can it be possible that soooo many people have ADHD, autism and/or depression at a clinical level? Maybe there's something to ErisLordFreedom's theory; it's certainly not a new idea.
posted by AFABulous at 10:31 AM on December 4, 2017 [3 favorites]
More generally, all these things exist on a spectrum for all people. I don't believe that "neurotypical" exists. I have probably spent a lot of money on gas waiting outside for friends who are "almost ready to go" when I've texted them an hour before I was going to leave my house, when I left, and when I was almost there. Are half my friends disabled? I just feel like ... how can it be possible that soooo many people have ADHD, autism and/or depression at a clinical level? Maybe there's something to ErisLordFreedom's theory; it's certainly not a new idea.
posted by AFABulous at 10:31 AM on December 4, 2017 [3 favorites]
Executive function is a talent/skill that is valuable to society. People who can be consistent, project, plan and complete things are more able to keep relationships and jobs. ErisLordFreedom's comment makes me think of all the barriers companies put up in order to be bothered less or to make 3% more money. "Fill out this webpage to register for an account, now put in the same information again to complete your application/register a complaint/get your rebate/return your purchase" "Read this EULA and agree to it in order to proceed" "Navigate our phone system which doesn't actually have the incredibly common problem that you want to complain about but has three choices for adding on more services." All of these deplete MY will and add unnecessary complexity and frustration to my day and I consider myself executively superfunctional. Companies don't give a shit whether they make it hard to do things. They make big money off of the people who can make it through their obstacles and leave the ones who can't to payday lenders.
Sorry about the rant, this article and the comments are great! They get me thinking about executive function in a new way. As others have commented, I wish there was some clear action available to help those who have difficulty with executive function. At the very least, it makes me think about it more.
Seriously, though, unnecessary time wasting should be punished. It is oppressive.
posted by Emmy Noether at 11:08 AM on December 4, 2017 [3 favorites]
Sorry about the rant, this article and the comments are great! They get me thinking about executive function in a new way. As others have commented, I wish there was some clear action available to help those who have difficulty with executive function. At the very least, it makes me think about it more.
Seriously, though, unnecessary time wasting should be punished. It is oppressive.
posted by Emmy Noether at 11:08 AM on December 4, 2017 [3 favorites]
My executive function collapsed when I was 43 or so. The intervening seven years have been a steady decline into what evidenceofabsence calls a small and stifling life marked by loss (jobs, relationships, self-esteem, my home, etc). On the other hand, it's a measure of comfort to see so many other mefites struggling with this, as well. So often, I feel like I'm the only one who has these problems.
posted by oozy rat in a sanitary zoo at 11:17 AM on December 4, 2017 [4 favorites]
posted by oozy rat in a sanitary zoo at 11:17 AM on December 4, 2017 [4 favorites]
My partner and I both have various sorts of neuroatypicality with varying levels of executive functioning issues. (His are bipolar related; mine are depression/anxiety/PTSD related but my therapist has pretty strongly suggested that there may be an undiagnosed autism spectrum component there as well.) Sometimes it's helpful in that we're able to compensate for each other's shortcomings - I can pretty much always keep the bills paid even when I can't do anything else, and he can pretty much always handle a certain basic level of house upkeep that I often can't handle, so between us we're almost one functional person. But in other ways having two of us can make things more difficult: twice as many potential things to get derailed or distracted by, coping mechanisms that sometimes conflict with each other, etc.
Sometimes I think about chasing that "undiagnosed ASD" possibility more thoroughly, in case it would provide me with some sort of additional insight about myself. Other times I remember that I worked with leading autism experts for years, and surely no matter how good I am at coping, if I really had autism, someone would have noticed it and said something to me? (Probably not. I tap-dance really hard at work to come across vaguely 'normal'. But enough to make me feel like a giant faker when I even consider the possibility.)
posted by Stacey at 11:31 AM on December 4, 2017
Sometimes I think about chasing that "undiagnosed ASD" possibility more thoroughly, in case it would provide me with some sort of additional insight about myself. Other times I remember that I worked with leading autism experts for years, and surely no matter how good I am at coping, if I really had autism, someone would have noticed it and said something to me? (Probably not. I tap-dance really hard at work to come across vaguely 'normal'. But enough to make me feel like a giant faker when I even consider the possibility.)
posted by Stacey at 11:31 AM on December 4, 2017
I just feel like ... how can it be possible that soooo many people have ADHD, autism and/or depression at a clinical level?
I mean, I think there's a few things here. One, just because they're frequently late getting ready to go doesn't mean they have a lot of other problems. Two, yeah, our current society is super bad about dealing with stuff. But like--the wave of diagnosis does not mean that this is new! People who didn't function well in society always existed. My grandmother leaned heavily on my grandfather to be basically functional and didn't do great even there. We look back at history and we tend to see the stories of people who were successful, but interspersed you see the wealthy family where one kid basically spent all the money and died penniless, or whatever. Aunt Edith died without ever having married or had children in a house packed with junk, but she was just your weird great aunt. And then you thought, aha, my weird great aunt had a hoarding problem. And now you think, oh, maybe my weird great aunt had a hoarding problem but also had some other problems long before that. A lot of this stuff was functionally invisible until it had labels.
The world was always full of people who couldn't hold down jobs, people who were a mess, people who functioned only because they had weirdly regimented lives, people who were considered "invalids" for years at a time, people who died well before middle age because they were unable to care for themselves. Women in particular, it used to be fairly normal not to leave home if you didn't marry, which would also have covered up a lot of problems. Society, as a whole, used to largely separate out people with mental health issues into "the sick ones we take care of" and "the useless ones we discard"; neither of these had a big visible space to exist in.
posted by Sequence at 11:39 AM on December 4, 2017 [28 favorites]
I mean, I think there's a few things here. One, just because they're frequently late getting ready to go doesn't mean they have a lot of other problems. Two, yeah, our current society is super bad about dealing with stuff. But like--the wave of diagnosis does not mean that this is new! People who didn't function well in society always existed. My grandmother leaned heavily on my grandfather to be basically functional and didn't do great even there. We look back at history and we tend to see the stories of people who were successful, but interspersed you see the wealthy family where one kid basically spent all the money and died penniless, or whatever. Aunt Edith died without ever having married or had children in a house packed with junk, but she was just your weird great aunt. And then you thought, aha, my weird great aunt had a hoarding problem. And now you think, oh, maybe my weird great aunt had a hoarding problem but also had some other problems long before that. A lot of this stuff was functionally invisible until it had labels.
The world was always full of people who couldn't hold down jobs, people who were a mess, people who functioned only because they had weirdly regimented lives, people who were considered "invalids" for years at a time, people who died well before middle age because they were unable to care for themselves. Women in particular, it used to be fairly normal not to leave home if you didn't marry, which would also have covered up a lot of problems. Society, as a whole, used to largely separate out people with mental health issues into "the sick ones we take care of" and "the useless ones we discard"; neither of these had a big visible space to exist in.
posted by Sequence at 11:39 AM on December 4, 2017 [28 favorites]
Chiming in for another "me too." I joke that my main hobby isn't sewing, it's FABRIC, because one of the main reasons why I like sewing my own clothes is that I can CHOOSE the nice soft fabric that touches my skin.
And yeah, the menopause stuff too. For a few years now I've been saying to everyone "hmm, I think I'm a little aspergery," and they all reply "oh yes, that makes so much sense now!" It works, sigh.
posted by Melismata at 11:53 AM on December 4, 2017 [1 favorite]
And yeah, the menopause stuff too. For a few years now I've been saying to everyone "hmm, I think I'm a little aspergery," and they all reply "oh yes, that makes so much sense now!" It works, sigh.
posted by Melismata at 11:53 AM on December 4, 2017 [1 favorite]
So, I'm a lady with executive function issues - I have a learning disability that's often comorbid with ASD, but I don't fit the diagnostic criteria for ASD. But, I apparently don't quite fit the criteria for ADHD either. I'm also fairly private about said disability. It's easier to be seen as smart yet intermittently lazy.
Said executive function issues make my life fairly frustrating, although medication has really helped in that regard. I have to do a lot of tap dancing to stay on top of task completion in a demanding job, which I can manage. In the back of my mind I'm always concerned that the threat of inconsistency will eat my career, so I have to commit to being an overachiever. So I'm great at my job, but it doesn't feel rewarding because I'm so hard on myself.
On top of that, having good work/life balance requires applying executive function at work as well as at home. Because I give so much of my cognitive load to work, I don't have a lot left to invest in my personal life. Being a little bit late to things and feeling like you're rushing on everything doesn't put you in a clear and present place to be that bubbly friend at happy hour. So you just skip happy hour because you're not in an appropriately "fun" headspace.
If those were my only sources of frustration, I could live with that. What is more frustrating, though, is this idea that all of us with similar issues are on the autistic spectrum. I read a lot of accounts of women with suspected or late-diagnosed ASD, and I'm friends with a few IRL - and it doesn't feel like our superficially similar struggles come from quite the same place. I don't really have sensory issues. I don't have trouble internalizing social conventions. I just feel like I have 45 seconds to the minute most of the time. It's as though there's no longer any narrative about women who just have ADHD, or NLD, or dyscalculia, or a TBI, or anything damn thing else that might be the source of their problems.
posted by blerghamot at 11:59 AM on December 4, 2017 [11 favorites]
Said executive function issues make my life fairly frustrating, although medication has really helped in that regard. I have to do a lot of tap dancing to stay on top of task completion in a demanding job, which I can manage. In the back of my mind I'm always concerned that the threat of inconsistency will eat my career, so I have to commit to being an overachiever. So I'm great at my job, but it doesn't feel rewarding because I'm so hard on myself.
On top of that, having good work/life balance requires applying executive function at work as well as at home. Because I give so much of my cognitive load to work, I don't have a lot left to invest in my personal life. Being a little bit late to things and feeling like you're rushing on everything doesn't put you in a clear and present place to be that bubbly friend at happy hour. So you just skip happy hour because you're not in an appropriately "fun" headspace.
If those were my only sources of frustration, I could live with that. What is more frustrating, though, is this idea that all of us with similar issues are on the autistic spectrum. I read a lot of accounts of women with suspected or late-diagnosed ASD, and I'm friends with a few IRL - and it doesn't feel like our superficially similar struggles come from quite the same place. I don't really have sensory issues. I don't have trouble internalizing social conventions. I just feel like I have 45 seconds to the minute most of the time. It's as though there's no longer any narrative about women who just have ADHD, or NLD, or dyscalculia, or a TBI, or anything damn thing else that might be the source of their problems.
posted by blerghamot at 11:59 AM on December 4, 2017 [11 favorites]
Hm, the menopause connection is interesting because (obviously) the hormonal balance changes and testosterone goes up. So how much of executive dysfunction decline can be attributed to testosterone levels? Could that be why more men seem to have difficulties with cleanliness, timeliness, etc? The friends I mentioned above are all trans men on HRT (I didn't know them before they started testosterone, so I can't compare their behavior before/after. I've been on T for two years and my EF hasn't changed as far as I can tell.)
posted by AFABulous at 12:02 PM on December 4, 2017 [2 favorites]
posted by AFABulous at 12:02 PM on December 4, 2017 [2 favorites]
Is there some way to rule out ADHD? Like, if speed does nothing for you, are you likely ASD rather than ADHD? And does that mean you're without recourse, or does that mean a whole new world of treatment options? Everything about this is painfully familiar, and I've tried and speed does not touch it.
oozy rat in a sanitary zoo, did you select that palindrome out of all the millions you could have picked because it resonated with you in the haunting way it does with me? Whenever I find myself in a situation where I'm likely to encounter, for instance, people on the Chamber of Commerce, my own failure to achieve basic lifestyle standards makes me feel exactly like an oozy rat. It's fine if you can hang out in your comfy nest, but it really stands out when you find yourself in a sanitary zoo. Too much of the world is a sanitary zoo.
posted by Don Pepino at 12:08 PM on December 4, 2017 [3 favorites]
oozy rat in a sanitary zoo, did you select that palindrome out of all the millions you could have picked because it resonated with you in the haunting way it does with me? Whenever I find myself in a situation where I'm likely to encounter, for instance, people on the Chamber of Commerce, my own failure to achieve basic lifestyle standards makes me feel exactly like an oozy rat. It's fine if you can hang out in your comfy nest, but it really stands out when you find yourself in a sanitary zoo. Too much of the world is a sanitary zoo.
posted by Don Pepino at 12:08 PM on December 4, 2017 [3 favorites]
Are they all like this?
tel3path: yes. 95% of all online-dating straight men want either sex or phone sex, whenever it suits their schedule, not yours. This one sounds like he was juggling a few different women, forgetting who was meeting when, and/or was married. But that’s a whole different discussion.
posted by Melismata at 12:33 PM on December 4, 2017 [2 favorites]
tel3path: yes. 95% of all online-dating straight men want either sex or phone sex, whenever it suits their schedule, not yours. This one sounds like he was juggling a few different women, forgetting who was meeting when, and/or was married. But that’s a whole different discussion.
posted by Melismata at 12:33 PM on December 4, 2017 [2 favorites]
Another woman-person with ASD (diagnosed) here. I actually do take (prescribed, low-dose) ADHD meds, and they help quite a bit with what I can only describe as "frustration/interruption tolerance". Executive-function-wise...I do okay as long as I'm in a familiar environment when I have some control, and as long as I can avoid over-commitment/overwhelm. In my case, I don't actually relate a *ton* to this particular author, though. For me, on the autism front, sensory and receptive/spoken language issues are a lot more prominent than purely executive functioning ones (I've never had a driver's license at age 38 due to sensory processing stuff). I'm total crap at multi-tasking, with medication only helping a tiny bit here (in the sense that without meds, it's harder to re-enter a given headspace after task-switching), so maybe that's somewhat EF-related?
In any event - I think even among professionals, there's a lack of consensus regarding what diagnosis best fits a particular person and their issues, and I think it's going to be ambiguous for women in particular for a long while, given that for so long, girls with ANY kind of issue were often assume to have "anxiety" and nothing else. For me, it's pretty clear that ASD is a "good fit", though admittedly, I've tended toward more of the "boy-style" stereotypes in a lot of ways, right down to literally lining up cars as a kid and being so into using the computer in middle school that I didn't really talk to classmates unless I was made to.
posted by aecorwin at 12:33 PM on December 4, 2017 [5 favorites]
In any event - I think even among professionals, there's a lack of consensus regarding what diagnosis best fits a particular person and their issues, and I think it's going to be ambiguous for women in particular for a long while, given that for so long, girls with ANY kind of issue were often assume to have "anxiety" and nothing else. For me, it's pretty clear that ASD is a "good fit", though admittedly, I've tended toward more of the "boy-style" stereotypes in a lot of ways, right down to literally lining up cars as a kid and being so into using the computer in middle school that I didn't really talk to classmates unless I was made to.
posted by aecorwin at 12:33 PM on December 4, 2017 [5 favorites]
That was precisely my reason for choosing the name, Don. I share your failure to achieve those lifestyle standards and feel like a perpetual outsider. I imagine others who have chimed in on this post feel the same way.
posted by oozy rat in a sanitary zoo at 12:33 PM on December 4, 2017 [3 favorites]
posted by oozy rat in a sanitary zoo at 12:33 PM on December 4, 2017 [3 favorites]
Well, it is an excellent name and first among palindromes in my heart.
posted by Don Pepino at 12:56 PM on December 4, 2017 [2 favorites]
posted by Don Pepino at 12:56 PM on December 4, 2017 [2 favorites]
Well, dang, first y'all remind me about my childhood with the parentification article and now it's all about my inability to get shit done.
So I spend all my time wanting to take care of people but at the same time, I can't handle certain basic tasks and it's just a perfect storm that presents as making scones for a birthday treat while not washing dishes for months.
Luckily, my diagnosed-spectrum husband has slightly different executive dysfunctions so we cope together (i.e. he likes to wash dishes yay).
posted by Katemonkey at 1:51 PM on December 4, 2017 [2 favorites]
So I spend all my time wanting to take care of people but at the same time, I can't handle certain basic tasks and it's just a perfect storm that presents as making scones for a birthday treat while not washing dishes for months.
Luckily, my diagnosed-spectrum husband has slightly different executive dysfunctions so we cope together (i.e. he likes to wash dishes yay).
posted by Katemonkey at 1:51 PM on December 4, 2017 [2 favorites]
Society, as a whole, used to largely separate out people with mental health issues into "the sick ones we take care of" and "the useless ones we discard"; neither of these had a big visible space to exist in.
I don't want to overstate this because I completely agree with the above and don't want to write off our social legacy of sweeping mental illness under the rug - but I would also say, there are some things about modern society that are extraordinarily and uniquely inflexible, which people with these issues (like me) often wind up slamming up against.
posted by showbiz_liz at 2:11 PM on December 4, 2017 [3 favorites]
I don't want to overstate this because I completely agree with the above and don't want to write off our social legacy of sweeping mental illness under the rug - but I would also say, there are some things about modern society that are extraordinarily and uniquely inflexible, which people with these issues (like me) often wind up slamming up against.
posted by showbiz_liz at 2:11 PM on December 4, 2017 [3 favorites]
tel3path, I'm not trying to be a jerk but if you have problems brushing your teeth every night, why not cut some slack to the guys you're trying to date?
AFABulous, you are being a jerk.
Whether or not I feel sorry for the guy who can’t cope with Tuesday is neither here nor there, as he can always find someone else to date.
I find it very hard to complete toothbrushing in less than an hour, and I therefore literally do not have time to cope with guys who are unable to even ARRANGE a date without wasting several hours of my time, let alone GOING on said date.
All my energy goes into keeping my own head above water, I do not have time to deal with a guy’s inability to handle basic tasks. Most people date and get into relationships because it will make their lives better. I can’t afford to destabilize myself by getting into relationships that will make my life worse. If a majority of males are socialized to behave as if they have the same dysfunction as me regardless of whether or not they actually do, then the normal rewards of partnership in life are always going to be out of my reach.
posted by tel3path at 3:56 PM on December 4, 2017 [8 favorites]
AFABulous, you are being a jerk.
Whether or not I feel sorry for the guy who can’t cope with Tuesday is neither here nor there, as he can always find someone else to date.
I find it very hard to complete toothbrushing in less than an hour, and I therefore literally do not have time to cope with guys who are unable to even ARRANGE a date without wasting several hours of my time, let alone GOING on said date.
All my energy goes into keeping my own head above water, I do not have time to deal with a guy’s inability to handle basic tasks. Most people date and get into relationships because it will make their lives better. I can’t afford to destabilize myself by getting into relationships that will make my life worse. If a majority of males are socialized to behave as if they have the same dysfunction as me regardless of whether or not they actually do, then the normal rewards of partnership in life are always going to be out of my reach.
posted by tel3path at 3:56 PM on December 4, 2017 [8 favorites]
I'm putting this as gently as possible: if you're not autistic (whether that's with an official diagnosis or coming to the recognition later in life with the "holy shit, this explains everything") please don't speculate about "is it this? is it that? maybe it's this other thing!"
Autistic people are very, very used to having non-autistic people theorize about us: we've got "male brains". We have no theory of mind. We don't understand humor, sarcasm, or irony. It's because our mothers were too distant from us… or maybe it's because they were too present and overbearing!
People who are members of other marginalized groups should, I hope, be able to see parallels and empathize with how frustrating it is to have non-group members theorizing intellectually about what to you is very real everyday experience. Please extend that awareness and consider whether your idle speculation is worth putting out there.
posted by Lexica at 4:00 PM on December 4, 2017 [9 favorites]
Autistic people are very, very used to having non-autistic people theorize about us: we've got "male brains". We have no theory of mind. We don't understand humor, sarcasm, or irony. It's because our mothers were too distant from us… or maybe it's because they were too present and overbearing!
People who are members of other marginalized groups should, I hope, be able to see parallels and empathize with how frustrating it is to have non-group members theorizing intellectually about what to you is very real everyday experience. Please extend that awareness and consider whether your idle speculation is worth putting out there.
posted by Lexica at 4:00 PM on December 4, 2017 [9 favorites]
2nding Lexica.
Also my problem with the Tuesday guy wasn’t that he couldn’t figure out Tuesdays, but that he could see the sentence “I have to go to Edinburgh for a project review meeting and don’t get back till the next morning” and read “I’m going on a date with someone else from OKCupid instead of you”.
posted by tel3path at 4:14 PM on December 4, 2017 [1 favorite]
Also my problem with the Tuesday guy wasn’t that he couldn’t figure out Tuesdays, but that he could see the sentence “I have to go to Edinburgh for a project review meeting and don’t get back till the next morning” and read “I’m going on a date with someone else from OKCupid instead of you”.
posted by tel3path at 4:14 PM on December 4, 2017 [1 favorite]
I wish there was some clear action available to help those who have difficulty with executive function
I think you meant on a societal level? Because please, please, please, I need someone to help me do the things, it's that simple on a one-to-one level. From each according to their ability, to each according to their need.
The double whammy for me is because I am autistic I don't have friends I can ask for help.
posted by lokta at 4:46 PM on December 4, 2017 [3 favorites]
I think you meant on a societal level? Because please, please, please, I need someone to help me do the things, it's that simple on a one-to-one level. From each according to their ability, to each according to their need.
The double whammy for me is because I am autistic I don't have friends I can ask for help.
posted by lokta at 4:46 PM on December 4, 2017 [3 favorites]
I'm a little wary of posting here because although I am autistic I'm male. But definitely in the "had a lot of social pressure put on me and came up more or less as a perfect mimic for neurotypical" mould that seems to characterise a lot about women with hidden autism, and I was late diagnosed.
But this speaks to me quite a lot, especially as I'm someone who totally craters on executive function on bad days, and for whom resilience seems so far away. I think the difference when you're autistic is the sound and detail of your inner narrative, and the thing about getting the diagnosis is that you can hone your attention and executive function to those things.
So, my executive function gets into a move things back to where they belong and tidy them up phase, and I'll do the washing up and tidy everything up and put up that picture and maybe move some furniture around, all interleaved with each other. And if I'm lucky, I'll make myself stop before I get too tired out and I'll reinforce the "that's a pleasurable habit and makes life nicer" idea.
And similarly, when I'm at work, I'll have a "tidy up filing" purge, and I'll file my email, my documentation, my queries and my reports. And if I'm doing reports (i.e. developing tools which report numbers and tables), then I might have 2 completely different datasets I'm reporting on, but because I've got the procedural knowledge of how to fit my numbers into the tables and cells and groupings that I need to fit the numbers in all laboriously loaded up in my mind, if I get stuck on one report, then I'm probably better to work on the other for a while in the extremely similar task rather than let that procedural knowledge drop out of my working memory.
Whereas for neurotypical people, there's no problem stopping when you come to a problem and emailing someone to ask a question, because they don't have to concentrate on turning thoughts into words. Or at least not concentrate so hard on it that they forget how to aggregate numbers into prettily formatted columns.
And likewise, when I write emails, I'm analysing every word to make sure that it makes sense, because otherwise I'll write something that's a big contextual leap for my interlocutor. So I end up loading up an almost complete simulation of my recipient in my brain, and it's draining. But I batch up my email writing, and I end up communicating pretty effectively. At a high mental cost, but much more affordable than if I wrote my emails as I went along.
So there's one example of a coping strategy, and why it's worth knowing.
Another self-diagnostic is how far ahead you look in a conversation. I understand that most people say things in conversation without really having thought of what the reply might be, because they can take that when they come to it. With me, when I'm saying something, the real work of conversation is a bit more like playing chess: when I'm working out what to say, I'm thinking through what my conversation partner's response to that might be, and then I'll select the statement which gives me the most worthwhile set of replies to that response.
So occasionally I'll be blindsided by a conversation because it doesn't go where I'm expecting, and I can't recover. Like one time when I bumped into a friend and went for a coffee, and she picked up that I wasn't feeling great. My problem was actually friendship drama, but she started probing me, and asked about work, so I answered (without a strategy, because I was totally in responsive mode - I'd not even consciously realised I was being probed as to why I wasn't looking like I was enjoying myself) that there were a few issues. And suddenly, I was on the receiving end of a well intended, and not that imposingly offered lecture on how to meet my career goals. None of which was related to what was bothering me either in terms of my big problem, or in terms of my issues around work. And when I talked to my brother about it later he was like "if you don't want to talk about something, you can always change the subject". But actually, I can't change the subject, because I don't have the tools to do all 3 of interacting in a conversation, intuiting my interlocutor's agenda and reconciling my agenda to theirs. Whereas neurotypical people have a much fuzzier bigger picture and they think "hey, I'm feeling a little intimidated" and say "anyway, I don't want to talk about it", all without really having their inner monologue have to say anything at all.
Anyway, I'm late to bed, I've written way too much here, and I've got washing to hang out before I go. But it's been healthy to write it for me, and maybe it's worth the effort of some of the people reading it. Huge apologies if not.
posted by ambrosen at 5:48 PM on December 4, 2017 [12 favorites]
But this speaks to me quite a lot, especially as I'm someone who totally craters on executive function on bad days, and for whom resilience seems so far away. I think the difference when you're autistic is the sound and detail of your inner narrative, and the thing about getting the diagnosis is that you can hone your attention and executive function to those things.
So, my executive function gets into a move things back to where they belong and tidy them up phase, and I'll do the washing up and tidy everything up and put up that picture and maybe move some furniture around, all interleaved with each other. And if I'm lucky, I'll make myself stop before I get too tired out and I'll reinforce the "that's a pleasurable habit and makes life nicer" idea.
And similarly, when I'm at work, I'll have a "tidy up filing" purge, and I'll file my email, my documentation, my queries and my reports. And if I'm doing reports (i.e. developing tools which report numbers and tables), then I might have 2 completely different datasets I'm reporting on, but because I've got the procedural knowledge of how to fit my numbers into the tables and cells and groupings that I need to fit the numbers in all laboriously loaded up in my mind, if I get stuck on one report, then I'm probably better to work on the other for a while in the extremely similar task rather than let that procedural knowledge drop out of my working memory.
Whereas for neurotypical people, there's no problem stopping when you come to a problem and emailing someone to ask a question, because they don't have to concentrate on turning thoughts into words. Or at least not concentrate so hard on it that they forget how to aggregate numbers into prettily formatted columns.
And likewise, when I write emails, I'm analysing every word to make sure that it makes sense, because otherwise I'll write something that's a big contextual leap for my interlocutor. So I end up loading up an almost complete simulation of my recipient in my brain, and it's draining. But I batch up my email writing, and I end up communicating pretty effectively. At a high mental cost, but much more affordable than if I wrote my emails as I went along.
So there's one example of a coping strategy, and why it's worth knowing.
Another self-diagnostic is how far ahead you look in a conversation. I understand that most people say things in conversation without really having thought of what the reply might be, because they can take that when they come to it. With me, when I'm saying something, the real work of conversation is a bit more like playing chess: when I'm working out what to say, I'm thinking through what my conversation partner's response to that might be, and then I'll select the statement which gives me the most worthwhile set of replies to that response.
So occasionally I'll be blindsided by a conversation because it doesn't go where I'm expecting, and I can't recover. Like one time when I bumped into a friend and went for a coffee, and she picked up that I wasn't feeling great. My problem was actually friendship drama, but she started probing me, and asked about work, so I answered (without a strategy, because I was totally in responsive mode - I'd not even consciously realised I was being probed as to why I wasn't looking like I was enjoying myself) that there were a few issues. And suddenly, I was on the receiving end of a well intended, and not that imposingly offered lecture on how to meet my career goals. None of which was related to what was bothering me either in terms of my big problem, or in terms of my issues around work. And when I talked to my brother about it later he was like "if you don't want to talk about something, you can always change the subject". But actually, I can't change the subject, because I don't have the tools to do all 3 of interacting in a conversation, intuiting my interlocutor's agenda and reconciling my agenda to theirs. Whereas neurotypical people have a much fuzzier bigger picture and they think "hey, I'm feeling a little intimidated" and say "anyway, I don't want to talk about it", all without really having their inner monologue have to say anything at all.
Anyway, I'm late to bed, I've written way too much here, and I've got washing to hang out before I go. But it's been healthy to write it for me, and maybe it's worth the effort of some of the people reading it. Huge apologies if not.
posted by ambrosen at 5:48 PM on December 4, 2017 [12 favorites]
Are there medications for executive functioning stuff? My mother definitely pinned this down for me when I was a teen, but I’ve been diagnosed with bipolar 2 disorder and always figured my lack of executive functioning was a result of being in depressive phases, versus when I’m hypomanic I can basically do anything (including ruining my life via substance abuse and falling into a pit of despair and then not getting anything done for weeks). I guess I’ll have to ask my therapist about this tomorrow, but I know due to my diagnosis I have limited options for medications. My uncle is famously depressed and has bad executive functioning (him and my mother both are traumatized due to a narcissistic parent) and he found Wellbutrin helped out immensely for him, but I can’t go on certain anti-depressants.
posted by gucci mane at 8:15 PM on December 5, 2017
posted by gucci mane at 8:15 PM on December 5, 2017
Medicine-wise (or self-medication, I guess), I have a pretty careful schedule with caffeine which really helps with concentration, and also signals to my brain whether it needs to be on or off.
posted by ambrosen at 12:55 AM on December 6, 2017
posted by ambrosen at 12:55 AM on December 6, 2017
I've been holding off on dropping this book recommendation in here because it's specifically for bipolar, and I don't know how well it would hold up for executive functioning due to other underlying causes. But now that bipolar's come up: It might be worth getting your hands on a book called Functional Remediation for Bipolar Disorder, gucci mane (and possibly others).
My partner gets hit really hard with executive dysfunction stuff - harder than most people with bipolar, apparently - and after years of struggling, found this book extraordinarily helpful. It's really intended for clinicians to work with their patients, but it's not too hard to adapt the exercise to personal use, either on your own or with a therapist. He's doing stunningly better now, and while it was probably a combination of things, he credits a lot of it to working with that book. (There's supposedly a great intensive outpatient program for folks with bipolar and executive functioning issues run by the authors at the University of Barcelona as well, if you have six months to go live in Barcelona. Sadly, our lives are not such that we can just up and move to Barcelona.)
posted by Stacey at 5:52 AM on December 6, 2017 [3 favorites]
My partner gets hit really hard with executive dysfunction stuff - harder than most people with bipolar, apparently - and after years of struggling, found this book extraordinarily helpful. It's really intended for clinicians to work with their patients, but it's not too hard to adapt the exercise to personal use, either on your own or with a therapist. He's doing stunningly better now, and while it was probably a combination of things, he credits a lot of it to working with that book. (There's supposedly a great intensive outpatient program for folks with bipolar and executive functioning issues run by the authors at the University of Barcelona as well, if you have six months to go live in Barcelona. Sadly, our lives are not such that we can just up and move to Barcelona.)
posted by Stacey at 5:52 AM on December 6, 2017 [3 favorites]
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